Family and Caregiver Schizophrenia Discussion Forum

Schizoaffective brother, parents are gone. Guilt over my limited relationship with him

My brother is 41 and I am 34. He was diagnosed with schizoaffective disorder, depressive type when I was 18 and a freshman in college.
When we were growing up, we had a decent sibling relationship. Due to our age and gender difference however, we didn’t spend a lot of time doing things together. When he reached his teens, he started to act out in ways I thought were typical teenage boy tendencies and I tried to not let it bother me. We grew up in a loving but strict home and my father’s reactions to my brother’s behaviors made me increasingly anxious over the years. My mother did her best to manage my father’s temper tantrums but never fully prevented them.
My brother had a very difficult birth. My mother was in labor with him for 48 hours and the umbilical cord was depriving him of oxygen. He was born by emergency C-section. I now know that he most likely suffered brain damage due to oxygen deprivation in addition to having a genetic predisposition to mental illness. When I was 2 and my brother was 9, my mother’s parents died in a plane crash. While I don’t consciously remember how such a loss devastated my mother, my brother had told the psychiatrist evaluating and diagnosing him years later that after the accident he felt as though he had lost our mother’s love. My grandparents’ death and the inevitable emotional fallout that ensued was the environmental component, I feel, that tipped my brother’s mental health over the edge, even though he wouldn’t begin to display intense negative symptoms until his early 20s.
Throughout his high school years, while never confirmed, my parents and I suspected my brother experimented with drugs, perhaps in order to self-medicate. It breaks my heart to think that he was suffering, perhaps hearing voices, and instead of coming to our parents, he tried to manage his symptoms on his own with substances that very well may have made his condition worse.
He got through high school and went off to college when I only saw him during holidays. Then he graduated and moved from upstate New York to Alaska where he lived for about 3.5 years. My parents kept tabs on him–calling his cell phone every few days to see how he was and wired him money to his bank account. He found odd jobs here and there, one was working at a hydroponic tomato farm, another was in the kitchen of a hotel as a dishwasher. Unfortunately, he could never keep his jobs for very long. Realizing he was unwell, he drove home to New York City and arrived at our crowded dining room table while my family entertained friends for dinner. He was pale and tired, but most alarming of all were the sentences that came out of his mouth. Disjointed. Non sensical. I remember being seized with fear, sadness and embarrassment for him, myself and my parents.
I went off to college, made friends and met a serious boyfriend. My brother was diagnosed the fall of my freshman year. Unbeknownst to me, my mother’s cousins, psychiatrists, had been discussing my brother and his behaviors for many months and helping my parents decide the best course of action. At his sickest when I was still living at home during breaks in school, he would pace the hallways at night. His hair grew long and he wore it in a ponytail down his back. I always made sure to lock my bedroom door.

Thankfully, my father’s tantrums subsided, but were replaced with deep sadness that I didn’t know how to alleviate. My parents changed their Wills, designating my mother’s cousins as my brother’s caretakers should something happen to them and they created a Special Needs Trust specifically for my brother. The beginning of my Junior year of college, 2007, my parents’ car was hit by a drunk driver. They died instantly. My life shattered. My brother’s life as he knew it shattered. Everything was in tiny, sharp shards. A new world was forced on us that we didn’t know how to navigate, alone or together.

I left school for the semester and came home. Over the course of 4 months, I slid into a deep depression. A family friend dragged me to get help and I got on a course of medication that saved my life and that I still follow to this day. My boyfriend and I became engaged. I worked hard over the spring and summer of 2008 to catch up so I could graduate on time. My fiancé and I moved to Chicago where our relationship, deformed by grief, took its last breath. I stayed in Chicago for 8 years, not wanting to move back to New York City where I lived with my parents, or where my brother still lived in our family home. I was afraid of him. Afraid of the memories the city would hold, and petrified of the shame I held inside.

My aunt, my father’s sister, learned of my brother’s debilitating illness like a sick cat crawling out of a bag. My parents had kept my brother’s diagnosis private from my father’s family to preserve his privacy. All throughout my life my father’s family had demonstrated that while some had good hearts with good intentions, they lacked the understanding and education needed to comprehend mental illness and its severity in my brother’s case. My aunt was floored, brushed aside, and vigorously racing to play catch up.

Since some time has passed now, I can look at her treatment of me with wiser eyes. I think it was her grief at losing her brother, sister-in-law, and in a very real way, her nephew that caused her to use me as her punching bag. She couldn’t fathom why my brother and I aren’t closer. She felt like I saw him as a burden. To be brutally honest, I do see him as a burden sometimes. I don’t handle his affairs or day-to-day issues, but I resent not having an older brother to look up to while we were growing up, or big open arms to fall into when I arrived home after our parents had died. We couldn’t and we can’t grieve together in the way healthy siblings would expect to, and he can’t be there to hold me when I need it most.

I’m back in New York City now after completing my MBA in the United Kingdom. A failed attempt at establishing a life on a visa forced me to leave, and I arrived at my friend’s mother’s apartment on the Upper East Side as Covid-19 forced the city into lockdown in March 2020. This past Easter Sunday, my brother showed up in front of my building, uninvited. He called and sent me emails asking if he could come in. Recovering from a hangover and sleeping Easter away as I’ve done for many years now, I ignored his call and responded to his email, saying I wasn’t expecting him, but we would get dinner soon. I’m still plagued by shame that I can’t be more for him. I’m ashamed that I don’t smile ear to ear when I see him, or jump at the opportunity to spend time with him. I’m trying to learn to give myself grace, and that I can’t expect myself to pour from a cup that’s been more or less empty since my parents’ death. I’ve been in survival mode, trying to move my life forward. I’ve been trying to figure out a career that has meaning, that gives me joy and puts a roof over my head. I’ve been trying to build romantic relationships one after the other, only to realize that I’m still broken and need more healing. I’m not ready yet. I don’t have enough good things going on in my life to balance my brother’s illness and the loss of my parents. That’s my reality.

Does anyone have any advice on how to help a sick sibling without sacrificing yourself?

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Where is your brother living now? You said your mother’s cousins were designated in your parents’ wills to be your brother’s caretakers. What are they doing? How much help does he need?

Wondering what you might need to do regarding survival support.

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Hi @caregiver1

Thanks for your reply.

My brother lives in my family’s home with a live-in caretaker. This has been the arrangement for the past 13 years.

My brother can’t live alone. He doesn’t clean, check the mail, pay the bills. But he does shower, grocery shop, etc for himself.

My mom’s cousins handle his finances and helped him establish his doctors and medications. Both cousins live in different states and have their own families and careers, so the day-to-day support and monitoring really comes from the caretaker.

My brother has never been violent or abusive in any way, and for that, I’m grateful.

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@amf1987 it sounds like his survival needs are taken care of and you’re wondering how much more you are obligated to do. I don’t have any answer. SZ/ SZA are just horrible diseases. I don’t know what we can do to help our loved ones.

My son won’t even leave the house after being snatched off the street by the police for --probably – (don’t know the exact circumstances, someone called the police after observing him from their house) standing around looking and acting mentally ill.

At least your brother is going grocery shopping. They say that 1/4 - 1/3 of the SMI will get better, the same proportion will get worse and most will stay the same, so who knows?

@caregiver1 not so much what I am obligated to do, but more disappointment in myself that I can’t connect with him and support him more? I feel so guilty. Over the years, every time I’ve tried to connect and spend time with him, I’m miserable, anxious, moody, impatient. It’s awful. He doesn’t deserve that.
Yes, SZ/SZA are indeed horrible. Sometimes I wonder if my brother’s in pain, if he’s tortured or lonely. I can’t bear to think about it all the time because it would destroy me. I wish I had a magic wand so I could cure him and everyone else who suffers with this.
I’m sorry someone called the police on your son. What was that like for you?
Yes, I remind myself of the many things my brother CAN do for himself and of the many things he is not, i.e. violent, destructive, abusive. I’m new to this community and sharing my experiences with a mentally ill sibling in general, but my heart breaks for so many loved ones that are facing a much darker picture.

@amf1987 This is the third time my son has been involuntarily committed – i.e. police involvement. Each time it’s hell. It looks like he’s being arrested. For being sick! :cry:

I am so, so sorry, @caregiver1! That must be very painful. Has your son been hospitalized before or is there any official record of his condition that can be shared with the police? I’ve heard that having documented proof a loved one has a history of mental illness can be helpful in situation like these. Sending you peace.

@amf1987 That’s a good idea to see if it’s something the police could use. Maybe they could bring him home the next time someone calls 911 out of concern for his safety, instead of taking him to the ER.

Yes, I think there should be another course of action available to law enforcement regarding mentally ill citizens. If someone is just standing there “looking” mentally ill and a neighbor calls the police, law enforcement should have more information available to them to determine the best course of action for that individual. If that person has committed a crime and knew the difference between right and wrong at the time, of course they should face the consequences. Is there a crisis intervention team available in your area, @caregiver1? My family has called them in lieu of 911 before to evaluate if my brother needed to go the hospital.

@amf1987 There is a crisis team where I live. When we called them last year when my son was acting psychotic by the time they showed up my son had left the house after getting wind of what was about to happen. They brought the police with them who tried to park out of site.

He was eventually located, handcuffed and taken to an ER. The whole thing did not go as hoped – e.g. with some peaceful negotiating. But I don’t know what could have been done. You’re not going to talk someone out of being psychotic.

Someone on this board one time said that almost all hospitializations when someone is actively pyschotic and delusional are involuntary, so the commitments will most likely to look like arrests.

Ideally, you don’t want to let it get to that point but schizophrenia, as I’m learning from the Coursera course, is episodic and there will be relapses.

Do not dwell on the past. Nothing can be done about that. Rather than going through all the reasons about what you cannot do, think about what you can do. May be you can go and see him once a week. You can order some food and eat together. You can call him every so often, you can order on the mail something he enjoys, you can meet him in a park and go for a walk, etc. All this of course has to come from your heart, with no expectation of getting something back., just for love, compassion and for what could had been that was not.

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My parents had to call the crisis team as well and my brother was taken to the ER in handcuffs as well. I was not at home at the time, but I can’t begin to imagine what its like for a parent to have to make that call.
I didn’t know there was a course on Coursera. I’ll have to check it out. I downloaded the app at the beginning of lockdown over a year ago thinking I would use my leisure time at home to learn something useful, but alas, I haven’t yet. Have you found the course on schizophrenia informative, @caregiver1?

Thank you for this response, @hopeisahead. My brother and I are having dinner together next weekend. I think reading your response encouraged me to take action. I’m hopeful, too, that the more I involve myself in his life and spend time with him, the less anxious I’ll be about it. Thank you.

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Hello and I truly feel your pain. I’m 64 years old in my brother 60 he was diagnosed 40 years ago After our parents past Myself and 2 other siblings have Have watched over him. I however do the bulk of that and I do feel a lot of guilt that I could have done more for him over the years. My parents did the best they could The rest of us did have families and children to raise can only do the best that you can and try to realise that your life does have to go on And hopefully you meet someone that understands your brother’s issue Injured possible involvement and just being there to support him. My family has just done everything we could for support for my brother. A lot of just talking him through things. He is miraculously pretty much self sufficient, He doesn’t clean very well but he does his pay bills and shop. He has been married and has a current girlfriend however they also had/have some psychological issues. It is hard even to be there for hi… he wishes that he was normal, as he puts it. We can only always provide words of encouragement. Stay strong

Dear amf 1987

I am do sorry to hear your story.
I have a son of 25 with exactly the same journey divorced his parents father the main root caused alot of problems that caused my son trauma at 16 entered into drug.
A sad story too.

The positives for me I treat him with lots of respect I learned alot from courses for carers.

Finding heir strengths the CHIME model.
How you see connect and understand this illness takes so much time. So days I dont like him, the unexpected mannerism, ways , arguments, physical I been through it all. 8 months in a psychitist hospital.
To have a carer caretaker a positive start that it is not put upon you
Try small chats to begin with.
Your own self care grief.
I have a great hypnotherapist this has worked on zoom he is amazing. In ely cambridge uk Dan Regan
I found just the time talking he address make clear notes and then bring to the treatment.

Aldo.it deciding how much of yourself can you give the grief lost of parents s big impact your life. Then the responsibility I wouldn’t wish 8t on anyone… there is no reason to feel guilt. His father when off to dubai recently and left him . There is someone no responsiabilty. It isn’t yours your dear brother.
Your own self care is so important and the little things to write down you are grateful for. Your brother is there .like my son but of course I see my son with this awful condition. I try to get a walk with him this helps to talk or just let him talk about a interest . Find his interest .

He not hurting , the meds probadly are really helping supporting him.
Do you know what his symptoms are of the condition. As it varies and can change , last week my son stopped his clonzapine x 5 days so that wasnt easy the withdrawal
.crazy…
Also out of interest what meds is he taking. Amount etc if it ok me adling if you know.
Please have hope optimism and I know to take small steps .
All my best thinking of you.

I have been in this forum for a few years now and this is my first time writing. All these stories hit home but yours just knocked me over the head. I have a 22 year old son diagnosed Sz and a 25 year old daughter that does not suffer from MI
My husband and I just completed our wills crating a special needs trust. In the process I have had many discussions with my daughter about what she would be expected to do in the future.
As a parent of a neurotypical daughter I want her free from constraint and overwhelming obligations. Yet I want her in my sons life for his sake as well as hers. Firstly, to oversee from behind the scenes any financial issues, making sure he has a place to live and that someone is overseeing his medical and bill paying situations. (Right now he is doing well but I know where this can lead if I am not there).
But mostly I want them to have even a tiny emotional connection. I think I will tell her to make sure they go to the movies once in awhile and out to dinner. I want them to text and email . I want no birthday or holiday to go unrecognized. We, too, live in Manhattan. It’s easy to be out in public which makes me most comfortable. I fear his begging her
For money and that’s my biggest worry. But I don’t want her to struggle with guilt and all I can do now is tell her that she doesn’t have to ever house him in any way. I tell her which friends, parents and institutions to reach out to.
But just to make sure he knows she is there. To contact him, to tell him she loves him (which he unlikely will say back) and to occasionally do something fun and out of the house.
We haven’t yet figured out where anyone will live in the future (right now at covid time, it’s all 4 of us under one roof). But I would hope there would be a big lobby wherever my son ends up, where they can sit and exchange stories and then she can maintain her own distance in her apartment. Her private space. That she does not have to ever share or invite him into.
It’s so complicated. The fact that you are here writing is so wonderful and I can only hope my daughter will take a proactive stance like you!

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You are a great writer. I want my daughter to read this. She was 9 and her only brother 14 when he started to slip into this crazy illness. The relationship became strained. He cannot be a support to her bc. He is very wrapped up in his own thoughts and problems. I know she misses that connection. She even picked a college in the city he was living in at the time. But he got sicker and covid left him unemployed so after 5 yrs of independence he has moved home with his girlfriend and is on disability. I know she fears after we die, she will be financially responsible fir him. I told her all along to go and live her life . Enjoy all the freedoms he cannot. Travel, fall in love and prosper. I know it is what her brother would want for her if he was well. Love your brother in your way. Try to stay in touch but maintain your mental health as well.

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Hello. I am logging in for the first time in quite awhile and your post struck me. My son with schizophrenia is 23 and my daughter will be 30 this month. Almost same age difference as you and your brother but he is the younger sibling. I have often felt grateful that he is younger thinking that somehow she was protected a little more because she was older. There are so many similarities in your story. My husband at first reacted in ways I had wished he wouldn’t mostly I believe out of fear. He has since come to that place of sadness along with wanting to make sure our son is taken care of. I recall in a meeting for family members of people with psychosis that my daughter tearfully stated that she had survivor’s guilt. Why was it him and not her? That really broke my heart. I would never ever want her to feel guilty for something out of her control. Or for her to not live her life as she wills. I want to shield her from as much of that as possible. I know one day when we are gone she will likely have that role. In your situation, you had the tragic loss of your parents thrust upon you and your brother sudddenly. You have spent a lot of time feeling afraid of him growing up and all of the emotions that go along with living with someone with schizophrenia and all of the family dynamics that go with that. Of course you would feel apprehensive and anxious. To answer your question on how to help a sick sibling without sacrificing yourself my advice is to take care of yourself. It sounds like you do want to have a relationship with boundaries. Maybe seek out a therapist to help you navigate a relationship with him and process your loss of your parents and your brother because that is a loss too. The loss of the person as they were or what you had hoped for them. It sounds like his day to day care is taken care of. Maybe start with building some kind of relationship. Maybe a chat on the phone first to feel out if he’s in good space and from there maybe coffee or such. Find common interests or even indulge his if he only has a few. My son loves anime and sometimes asks me to watch it with him. I don’t like it at all lol but I know he has no friends and in his limited capacity he is wanting to connect with me. Wherever we go he is talking to himself. I just ignore it and talk to him like I don’t notice. I wonder if you have access to any NAMI meetings? The family to family was very helpful to me.

Please don’t spend another minute feeling guilty. Be gentle with yourself, allow yourself grace and give yourself time. Take small steps with your brother.

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Thank you for responding, @x003554. I’ve been struggling because I feel like my best has not been enough. Now that time has passed and I’ve grieved my parents, I feel clearer and able to turn my attention to my brother more. That being said, I am more starkly aware of what is too much for me in terms of supporting him. When I was younger, I wasn’t sure what boundaries felt like. I thought I was inadequate and uncaring.
That’s a blessing that your brother can shop for himself and pay bills. It’s also a huge blessing that he is able to maintain relationships with others have a partner. My brother can’t do that, and I pray he doesn’t feel loneliness.
You stay strong as well.

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Hi @hereandnow

Thank you for your response. I’m not familiar with the CHIME model, I will research it.

I cannot imagine what it must have been like to have your son in a psychiatric hospital for 8 months. That must have been very challenging. I also cannot imagine what it’s like to have your son be physical with you when he is unwell. You are very strong.

My brother loves art and he loves creating it. I think this is a common space we could meet in.

When my brother was most unwell and hitting rock bottom after his return to NYC from Alaska, he was delusional-- He believed people were after him. He had disorganized speech. He moved slowly. His hygiene suffered. It was terrifying and devastating.

I’m not involved in his medication management, but I do remember when I and a family friend counted his Lithium pills and determined he wasn’t being compliant with his medication. That’s all I know.

Sending well wishes to you.